Treating fear of cancer recurrence in primary care

Abstract

Even after successful cancer treatment, many people experience fear of cancer recurrence (FCR), which decreases quality of life. In our individual participant data study (n=9,311), 39.6% of cancer patients and survivors experienced moderate FCR and 19.2% experienced severe FCR. Younger people and women experienced slightly more fear, but people of all ages, genders, cancer types and continents experienced FCR, and also regardless of how much time had passed since the cancer diagnosis. In a survey study (n=5,323), we found that 94% of people with FCR need some form of support. In part, this can be provided by friends and family, for example by talking about it or by doing fun activities for distraction. For other needs, such as psychological help, tips and information, professional help is required. We investigated whether treatment in primary care for FCR is effective and feasible. Patients received an online cognitive behavioral therapy-based program and three to five sessions with a trained mental health worker (MHW) in their own general practice. Only 62 (4.5%) of the invited patients participated in the study. With these low numbers, the effectiveness of the treatment could not scientifically robustly be evaluated, but potential was seen with a decrease of 3.5 points on the Fear of Cancer Recurrence Inventory Short Form in the intervention group and 0.7 points in the control group. In a follow-up study (n=173) in which the live sessions were replaced by video calling, the effectiveness of the intervention was demonstrated. It significantly reduced FCR (p<0.001), as well as FCR-related distress, and general anxiety, distress, depression and somatization complaints. All these reductions were maintained at the 10 months follow-up. Both in a survey and in an interview study patients and MHWs expressed they found the treatment practical and were satisfied with the result. Based on the research, we recommend to discuss FCR with all cancer patients as a standard part of care; to make information and tips about FCR more widely available; to provide matched care to patients with FCR; and to implement the researched intervention. For the last point we recommend a) including information about cancer and this intervention in the regular curricula for general practitioners, MHWs and oncology nurses, b) ensuring that the online program becomes available in existing e-Health platforms to make it easily accessible, c) offering further training for MHWs and nurses who want to learn more or specialize in this area, and d) creating a short online educational module for MHWs and nurses who want to quickly learn what they need to know to provide this support. We also recommend further research to identify factors, especially psychosocial factors, that predict the severity of FCR, and how this can contribute to distinguishing different groups of patients with different care needs. Because the impact of the fear does not equal the severity of the fear, we also recommend doing more research to discover what does determine the impact and what determines which types of patients are best helped by which types of care.